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Patient, Family & Public Involvement (PPI)

Newsletters and resources

Key Reports


Experiences, concerns, and priorities for palliative care research during the COVID-19 pandemic : A rapid virtual stakeholder consultation with people affected by serious illness in England

Johnson, H, Brighton, LJ, Clark, J, Roberts, H, Pocock, L, Ogden, M, Kumar, R, Gardiner, C, Higginson, IJ & Evans, C                                

We report the findings of a rapid virtual stakeholder consultation to understand the emerging experiences, concerns and research priorities of people affected by serious illness, in relation to palliative care, during the COVID-19 pandemic.

Read our two-page summary of the report here


Check out our latest newsletter to see what patient and public involvement activities we have been up to, and to find out about upcoming events and opportunities. 

COVID-19 Special Issues

May 2020

April 2020

Previous newsletters:

Winter 2019

Summer 2019

Winter 2018

Summer 2018

Winter 2017

Summer 2017

PPI workshops 

To date, the Institute has held eleven patient, family and public involvement (PPI) workshops. The PPI workshops are typically a full day event, where attendees are invited to hear presentations on researcher, patient and family experiences, focused on a particular theme or topic within palliative care and rehabilitation. During these workshops patient, family and public attendees can get actively involved in shaping the research happening at the Cicely Saunders Institute. Find out more in some of our recap reports from the last three years below: 

Virtual Workshop - June 2020

November 2019 - Large data set research in palliative care and rehabilitation

May 2019 - Evaluation of Patient and Public Involvement; Findings and Future Steps

November 2018 - Palliative Care and Ageing

June 2018 - Patient and Public Involvement: Does it make a difference?

November 2017 - Carers in Palliative Care Research

April 2017 - Difficult Conversations

'Conversation Starter' Events 

We have developed a series of engagement events, to showcase our research, engage people in the area of palliative care, raise our profile, and attract new patient and public representatives. Our conversation starters, funded by King's College London and the Wellcome Trust Public Engagement grant scheme, aimed to start a public discussion around difficult topics in palliative care and rehabilitation. Find out what we did in the last two years via the below reports:  

Conversation Starter 2018: Loss, Grief and Bereavement

Conversation Starter 2017: Death and Dying 

PPI workshop 16
PPI workshop 3
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